Warble

Reassurances

2007-11-11T19:45:00.000Z

This is just a quick note to say that...

Ladan is much more stable and is hopefully over her infection
The friend that I reported to be in intensive care a few weeks ago is now at home
My own car crash did me no harm and I have an offer of a replacement car

It has been a very crazy three or four weeks and I am still feeling a little bowled over by it all, but it looks like we are all well.

Amy's Marathon

2007-11-06T22:37:00.000Z

montague: to myself

Amy has written a note to herself that follows her New York Marathon run on Sunday. Thanks to all who supported her!

Manoocher's Accident

2007-11-06T22:26:00.001Z

Manoocher was able to send me an email today and asked that I no longer share information about his progress through my blog. To avoid controversy and confusion Diana is the only source for information relating to Manoocher's accident and recovery. Her email address is dkitanova[at]excite.com.

The last two weeks and Ladan

2007-10-30T21:36:00.001Z

People in minimally conscious states are said to be prone to certain things, top of the list come chest infections and pressure sores, both because of a general lack of movement. Ladan has had a few suspected chest infections over the last few years but nothing major, just requiring a basic course of a regular anti-biotic and her skin has always remained in reasonably good condition, which is a credit to the nurses and carers who have been involved in her care.

On the evening of 17th October Ladan started breathing quite rapidly. In the early hours of the morning the breathing seemed to have calmed down but when I came back some hours later Ladan was being attended to by two nurses trying to help her with chest problems. The doctor was called out and she recommended that Ladan get to hospital fairly quickly. Before noon that Thursday we were in hospital.

In hospital things moved slowly. It was may hours before a doctor came to see Ladan, they decided to prescribe some anti-biotics. Ladan's condition worsened throughout the day and she really seemed to be struggling for breath as time went on. As I have mentioned before, my presence and support for Ladan have often helped her be more settled and so I was diving in and placing myself right before her eyes, giving her lots of love and encouragement... this was incredibly traumatic for me. Only once before, in the very early days of this stage of Ladan's life, have I seen ladan looking so terribly uncomfortable and struggling, it is a very difficult thing to witness, there was a sparkle in her eyes when I was in front of her, I knew that she knew that she could handle this, but that didn't make it much easier to behold and inside I was yearning for the doctors to get some treatment started and to start relieving the problem for her.

Eventually we were transferred to a ward where they had no idea what Ladan's situation was or what she required in terms of facilities or care. This initially caused an upset between the staff which is not the best welcome you can have to a ward. The nurse on duty was telling me that he was not sure he could provide Ladan with the care she needed as he also had a lot of other patients to look after. Ladan was getting worse at this point and the doctors were called to have a look at her again. Ladan got onto a more direct treatment. Because Ladan was very ill there was a lot of consultation about possibly going to intensive care. The consultation was not just about why we might need to go to intensive care, but also about whether or not we should go to intensive care. Many medical staff were apparently unhappy that a minimally conscious person should be entitled to intensive care, and the debate over whether we as a family wanted Ladan to receive any treatment, if required, was had several times in the first 24 hours of our stay. The following morning Ladan's assigned consultant in the hospital, who has an excellent reputation for dealing with respiratory disorders and is also the head o f the Intensive Care Unit, modified the treatment regime and confirmed that, on this occasion at least, intensive care would be available for Ladan if she required it.

With the help of Ladan's Mum, Shahla, we were able to be with Ladan 24 hours a day for the duration of Ladan's stay in hospital, ensuring that Ladan was as comfortable as possible under the circumstances. Unfortunately the staff on the ward were very busy and the setting meant that it was not possible to always provide Ladan with some of the care she would normally receive. I got hooked up to some basic Internet access through the hospital's Patientline service, which worked less well than a basic mobile phone would with the Internet, but it gave me some facilities (not including blogging).

Ladan became increasingly stable. She was very chesty all the time we were in hospital and there were good times and bad times. The most traumatic period was not repeated but it never felt like it was that unlikely to happen again. Toward the end of last week Ladan's consultant started predicting that we would be able to leave on Friday as the blood test results were encouraging. On Thursday Shahla and I repositioned Ladan in her bed in the evening and I felt that Ladan's skin was not as good as usual. This plagued me for a while, as I was starting to wonder if Ladan might be chesty because of discomfort rather than infection. On Friday morning the consultant came in and suggested that Ladan could stay in hospital over the weekend so that they could see how she did without anti-biotics. Given that Ladan is currently in a nursing home with more intensive nursing care than the hospital were able to provide I asked if it would make any difference if we went back to the nursing home and the consultant put the wheels in motion for this to happen, we returned on Friday afternoon.

The first thing we wanted to do was get a proper shower for Ladan and wash her hair, on seeing the state of Ladan's skin I was almost shocked to tears, I have never seen skin looking so sore, thankfully that is now very much on the mend.

Over the weekend Ladan remained very chesty, Sunday was a slightly better day and Monday was a very god day where she was looking much brighter and healthier. By comparison Ladan has been a bit out of it again today but her chest does not seem too bad. It is looking very promising that this bad spell is over now, but Ladan is still coughing up slightly creamy secretions from her chest, so there is an element of caution to our optimism. Even if there is a residual infection it should hopefully just require another course of basic anti-biotics to finish the job, rather than a hospital visit, so long as it is recognised soon enough.

In the midst of this I had yet more drama of my own, though luckily not serious, in the form of a car crash, which can be read about here.

Ladan has gone into Hospital

2007-10-25T19:40:00.000+01:00

These are two quick updates because I have access to the Internet for a moment, I am in hospital most of the day where Internet access is minimal, I will write fuller updates when things are more normal with Ladan, meanwhile some updates can be found on Facebook if you are a friend of mine on there.

On Wednesday 17th October, in the evening, Ladan started breathing quite rapidly. Though she seemed a little more settled in the early hours of the morning she became worse on Thursday morning and was sent to hospital. In hospital Ladan continued to worsen for the next 20 - 24 hours before starting to settle. Heavy anti-bitoics and steroids seem to have her nearly back on track. It is not clear what the cause of the problem was. Ladan is still rather more chesty than usual but other than that seems fairly stable and may be discharged from hospital, back to the nursing home tomorrow.

At much the same time that Ladan became unwell my good friend Manoocher Samii had, according to an email I received the following morning from his wife, a very serious car accident. I was told that a vehicle overtook a lorry without realising that Manoocher was coming the other way, the driver at fault died, Manoocher rolled down a bank or hill and needed to be cut out by the fire brigade and was brought to life by the paramedics, they had thought that he would not live. He was taken to intensive care where at some point on Thursday his breathing and pulse improved and he is reported to be making an unexpectedly good recovery.

Prayers, possitive thoughts etc. would be much appreciated both for Manoocher and for Ladan.

Amy's Marathon Endeavour

2007-10-12T20:32:00.000+01:00

On November 4th this year Amy Sahba will be running the ful 26.2 miles of the New York Marathon to raise money for research into leukaemia and lymphoma.

As a young child Ladan suffered from leukemia and was lucky enough to make a full recovery. More recently, Ladan's father Bizhan has also survived a different form of leukemia, though he has been left with less energy on a day to day basis.

Amy's grandfather, Frank Marshall, died from leukaemia in 1982. On November 4th Amy will be remembering her "Daddy Frank" as she sacrifices the comfort of her body in his name, in Ladan's name, in Bizhan's name and in the names of (currently) six other people through whom cancer has had an impact on the lives of Amy and/or her friends.

Throughout her life Ladan has frequently made donations to Cancer Research in the UK, helping increase the odds that other people would survive cancer as she did. For the last few years she has been unable to do this and so I would very much appreciate it if you could support Amy as she runs in Ladan's name, exactly three years to the day that Ladan fell unconscious.

You can read Amy's sponsorship page, a little more of the background to her decision to run marathons to raise money, and make a sponsorship offer, by clicking here.

Link: Team in Training - Amy Sahba
Link: Amy's blog, montague

[Portrait photo (right) by Shahram Dana (modified)]

The Zolpidem Question

2007-10-12T18:00:00.000+01:00

A few weeks back Ladan started a two week course of a sleeping tablet called Zolpidem. I blogged about the fact that in a small but not insignificant number of cases Zolpidem has been found to awaken people from coma like states for the duration of its effect (around a few hours).

I have previously mentioned that there were no dramatic results from using the medication with Ladan, but that there may have been some small changes. A full update should follow in the next week or two, but this entry is to explain the delay in reporting how I feel the trial went, and to give some indication of what happened during the trial. In this blog entry I am not going to differentiate between what was observed by staff and what was observed by family members.

Zolpidem is a short acting drug, it usually starts acting within 15 to 30 minutes and stops working after a few hours. About 15 minutes after the drug was administered Ladan would typically go through a period of increased rapid eye movements for a period of around 10 - 30 seconds, with her eyes closed, and then seem generally sleepy. She remained arousable by movement or speech, but was not generally as agitated when aroused. Ladan often has quite normal reflexes which are superseded by extensive behaviour (stretching out her arms and legs) if she remains disturbed or uncomfortable for a "prolonged" period. That "prolonged" period may be a matter of seconds, but can often be avoided if you react to the non-extensive reaction and remove the stimulation, or otherwise relax Ladan, soon enough. During the course of the medication Ladan was found to be generally less extensive and her reflexes appeared to be slightly better refined. Ladan's individual fingers were, for example, felt to react better as individual fingers when touched rather than as a collection of fingers reacting together. There were also times when people felt Ladan was more alert or aware than usual, and that her reactions to speech were more natural. Most of the the possible differences that were observed were not new, but were either more frequent or, as in the case of being more relaxed and less extensive, more prolonged.

One of the more notable facts about most of the observations referred to above is that these "differences" were being observed throughout the whole time period of the trial, that is to say they were not limited to the few hours during which the drug would typically have an impact, the "difference" was still being noticed at least 21 hours after the drug had been given. I have three possible explanations for this, firstly it is possible that some of the "differences" were seen because they were being looked for, secondly I theorize that some part of the mind was put to rest by the tablet and that this enabled better reactions when the resting effect wore off (this would require a medical opinion, which I hope to get soon), my third explanation is that I was personally present more of the time. I have previously mentioned in blog entries that there appears to be a direct link between how settled Ladan is and how much time I spend with her. Many previous times where Ladan has seemed to be more aware have also followed on from an increased presence from myself. As I was arriving to be with Ladan from an hour to an hour and a half earlier each day and not popping out as often it is likely that at least some of the improvement would be down to this, rather than the medication.

So, following the two week trial Ladan had a week of how things were previously, and now I am trying to spend extra time with Ladan for a week to see what effect that has. It has so far proved difficult to spend the extra time with Ladan, so to get a farier comparative picture this might stretch on a little beyond one week. Once I have a better idea of the difference between "Ladan with more James" and "Ladan with Zolpidem and more James" I will be writing up a report on the differences for the relevant medical staff to look at. There is a small possibility that they will feel the medication may be worth trying for a longer time period, but otherwise there are other things that have had significant results on people in conditions similar to Ladan's which I hope to research further and, if appropriate, discuss with Ladan's doctor.

Possibly to sleep more...

2007-09-19T10:47:00.000+01:00

At 9:30 this morning (British Summer Time) Ladan had her second dose of Zolpidem, this time she had the full recommended 10mg of the drug. It is now an hour and twenty minutes later and there are no uncommon observations. If anything the medication has made her more restful for a while and more reflexive when moved (this needs a fuller explanation on the different ways the body can respond to things, which I will provide another time soon).

In the 10-15% of people, in similar conditions to Ladan, who tried Zolpidem that reacted well to it, a positive reaction was usually seen after the first dose. There is at least one case where the first positive reaction was after more than a week of using the medication at 10mg/day, so hopefully we will continue for a couple of weeks to see if anything does eventually happen. There certainly don't seem to be any negative side effects appearing from the medication.

Thank you so much to everyone who has been thinking of Ladan and praying for her through this. I really appreciate it very much indeed.

Initial dose of Zolpidem

2007-09-18T10:45:00.000+01:00

At 9:45 this morning Ladan had her first dose of Zolpidem (see last blog entry), it was a 5mg dose and the recommended dose for this use is 10mg, it is now just over an hour since that dose was given and there is no obvious effect from the drug.
The prescription written for Ladan says 5mg a day on it so now I will ask to get that changed so we can try the proper dose. The drug does not seem to have had a particularly sedative effect on Ladan either, which is its intended use in patients without impaired consciousness or brain injury.

Sleep more, or awaken?

2007-09-15T15:02:00.001+01:00

In the coming week Ladan, my beautiful wife who is in a minimally conscious (coma-like) state, is likely to be given a medicine called Zolpidem. It is commonly used as a sleeping tablet but when, several years ago, somebody in a long term coma-like state was given the drug to make them more restful they miraculously awoke and started speaking. Several hours later the drug had worn off and the patient was unconscious again. The tablet has since been tried with many people who have suffered some form of brain damage and in a significant number of cases the success has been repeated.

For people in a persistent vegetative state (long term coma with no signs of awareness or communication) or a minimally conscious state (long term coma with some signs of awareness but no reliable communication) the success rate of the medication in having some form of measurable benefit is approximately 10-15%. In less severe cases of brain damage the success rate might climb up to over 50%. In all cases where there is success there is the possibility that continued use brings about gradual recovery from the underlying condition.

Zolpidem was in the news a lot last year for these unexpected results being experienced around the world, an article that appeared in The Guardian can be found here. I also blogged about it here.

Zolpidem is not the only medication that has been found to bring recovery to people in long term coma-like states. A drug called levodopa, which is generally used for treatment of Parkinson's disease has been found to have a much more dramatic and long lasting effect on people in these conditions and this has been known about for a long time now. Back in 2005 I asked Ladan's consultant if we could try levodopa with Ladan and he said that he would have been willing to consider it if Ladan was on less medication. As time has passed the other medications that Ladan required have all been removed or reduced to a minimal level and so a few months ago I asked Ladan's GP if we could give Zolpidem a try. He contacted Ladan's consultant who said that he did not believe it would have any effect but had no objection to it being tried. These processes always take a long time with letters being sent between different parties and we waited some extra time because Ladan came off another medication last month and it is wise not to do two new things at once, if avoidable, as it makes determining the source of side effects harder... we are now, however, at the point where the nursing home have a prescription and so we should be just days away from being able to try Zolpidem.

I am still unsure as to whether I should have asked to try levodopa first. In searching for Internet based information on levodopa there is at least partial similarity between Ladan's condition and the cases where it has quickly brought people out of PVS (persistent vegetative state) or MCS (minimally conscious state), but I have been able to find more information on Zolpidem, its use seems to have been reported on more globally, and because of the major publicity last year I was able to find the names of the doctors that had pioneered the trial of Zolpidem for brain-impaired patients and was able to contact them directly by email for advise. They were very helpful and forwarded even more fascinating information about the effects of Zolpidem where it has been successful.

If you are reading this blog and have experience of using levodopa and/or zolpidem in a long term state of impaired consciousness then I would be very interested to hear from you.

One of the most interesting findings with Zolpidem is that brain scans have shown areas of brain tissue that were formerly considered to be "dead" come back to life during the awakening period that the drug induces. This probably isn't the place to go into more technical detail on this but here is an article that touches on this, with further references at the end.

Ladan will hopeful be recieving her dose of Zolpidem during the mornings, the recommendation is an hour after breakfast. It usually starts to work after the first dose - if it is going to work at all - within about 30 minutes or so. If there is no discernible benefit after two weeks then it is recommended that the medication be stopped.

Even if Ladan is one of the 10-15% for whom this drug might have an impact then there is no way of telling what that effect will be. I will update the blog when we have tried the medication.

18th June 1983

2007-06-18T12:52:00.000+01:00

18th June marks the anniversary of the execution, for being followers of the Baha'i Faith, of ten women in Iran in 1983. Among the ten women was Ladan's aunt, Shirin Dalvand, pictured above holding Ladan several years earlier in Shiraz.

Baha'is were persecuted and put to death in very large numbers, this is not the anniversary of a rare event. The occasion is noted for the fact that all the Baha'is executed on this occasion were women, many of them young, one of them only seventeen years old.

Shirin herself was twenty-five at the time. Ladan had fond memories of her and Shirin displayed great affection toward her too. Shirin's parents, her brother and two sisters, all live in Newcastle and the family remember Shirin, and the numerous other Baha'is who's lives were taken because of their Faith, at this time.

Links:
18th June 1983
Persection of the Baha'i commun ity in Iran
Music Video about Mona
Mona's Dream, a film in production

Infection and Immobility

2007-05-28T19:23:00.000+01:00

I am pleased to report that Ladan seems to be pretty much over her chest infection, she had a five day course of anti-biotics and is certainly more settled now.

For people in Ladan's condition, or any condition that results in a large degree of immobility, simple infections can be a very big deal. With chest infections a lack of movement means that secretions have more of a tendency to stay stuck in the lungs and what would be a trivial infection for most people can quickly become a life-threatening disorder such as pneumonia. It is probably the case, and certainly is my experience, that most people with reduced mobility die from infections which are picked up in the environment they are being cared for rather than from anything related to the cause of their condition. Taking the case of people who have had strokes or other brain damage, there is very little that can actually go wrong from their actual condition if they are stable, complications tend to only arise from infections they acquire.

People in minimally conscious states also tend to suffer a serious set-back in terms of alertness
when they get infections. A simple cold can cause somebody who was looking around the room regularly and occasionally seeming to answer questions with a discernible blinking pattern may become very sleepy for up to a month just from a few days of a cold.

These matters are not helped when it takes several days of illness before medical staff take a proper look and prescribe the required medication, or when it takes several days for medication to be acquired and started... and such problems are not at all uncommon.

It is, therefore, with some relief that I can report that Ladan does not seem to have taken a very significant knock from this infection and was already seeming fairly alert again for some of today. Thankfully this infection was spotted quickly and dealt with rapidly. Assuming it is all clearing up now, it has been nothing significant.

Please remember to send your messages or memories to Ladan via this link.

Ok blood results...but

2007-05-21T23:46:00.000+01:00

The last couple of days something hasn't seemed quite right with Ladan and then last night she required a lot of chest care, the nurses decided that she may have a chest infection and the doctors have come out to see her and they have agreed that she should have a course of anti-biotics.

While the doctor was here I asked if there were any results from the recent blood tests, there are two markers that are most important to watch for Ladan, one was perfect and the other was considered fairly normal, so that was good news.

For complicated reasons, and not complications with Ladan, the anti-biotic that was prescribed for Ladan was changed twice so the final prescription was written at about 10pm, I drove up to a Boots night dispensary to get the medicine a short while ago and Ladan has had her first dose.

We had a nice surprise earlier when Chris and Zhamak Lee came to visit. Ladan was probably a bit more out of it than usual with her infection but Zhamak is very good at talking to Ladan, many people find it difficult to know what to say and to say it just as you would in normal conversation, I know Zhamak doesn't find it that easy either bt she does it very well. I would still like to encourage people to send Ladan messages, she does become visibly interested when hearing them, especially when I get to pick the moment they are played.

Link: Send yourself to Ladan

Ladan is more settled

2007-05-12T20:07:00.000+01:00

Ladan has been generally more settled recently, compared to my last post. We are awaiting results from blood tests which were finally done on Thursday, it takes about a week for the results, then I'll try to write another, fuller update.

Culture of Suspicion and Blame

2007-05-12T18:27:00.000+01:00

This is a very difficult blog entry to write without causing offence to people whom I do not wish to offend. This post is not specifically about the way things happen in Ladan's current care home, it is about the way in which over the last few years, as family members, we have often been accused of wrong-doing without a sound context, and warning that this seems to be, as told to me by other people who are involved in similar environments, endemic to the care profession.

I am not going to include any examples in this revised blog entry, I want to avoid upsetting the people involved in any specific incident, but you will just have to understand that I can give examples from every place that has cared for Ladan.

You would like to think that family members would work hand-in-hand with clinical staff in deciding and providing the best level of care for their loved one. Many care institutions want to offer this and try to offer this, but it is not something that they know how to do. Most people with serious neurological or physical conditions are left by their families for most of the week with just occasional visits. In cases where there is a significant rate of recovery some patients prefer a smaller amount of visiting and so this is not necessarily a bad thing, but this means that clinical teams are not familiar with a situation where the family members have a better picture of the day to day state of a person in their care than anybody else, or where they even want to contribute to the care for their relative. My objective is to get Ladan home as soon as is practical and good for her, most people prefer to leave their relative with a caring team. Carers and medics are not, therefore, very familiar with working along side a family member.

For some reason, as kind, caring, loving and friendly as nurses and care workers can be, they are generally over eager to feel that a family member is doing something wrong, they may hear a sound and guess that it is the sound of the relative doing something they shouldn't, they may see a sign and assume it is a sign that a family member did something they shouldn't have done, they may see something they don't understand and assume it is something quite dangerous.

While there are a small number of people who will ask you about any suspicions they have or point out if there is something not right, it is very common for staff to chat about what they heard or saw and to share their concerns about what it might have been, these concerns, rather than the sound or sight that was actually witnessed, eventually get to somebody in a position of seniority who then decides to talk to the family about it. The family are then presented with an allegation, the senior member of staff will not have had the time to investigate the source of the allegation properly before bringing it to the family and will usually present the allegation as a statement of fact rather than a query. Sometimes the allegation itself is even broadened to be an allegation of general wrong doing in a whole area, based on one related allegation, itself generally false. Almost always, if a family member denies the allegation the denial is treated as dishonesty. If the family member is able to work out where the allegation originated, and point out the true facts, they are again accused of being dishonest.

As I am not including examples, it is important for me to repeat that everything I am writing is an accumulation of our experiences in this environment and that not everything I am saying is relevant to Ladan's current care home.

There is usually somebody you can find in an establishment who will listen to the facts of a matter, it is not always the case, however, that they will be present when the allegations are being made. Or if too many allegations are being made at once then the opportunity may not exist to get to the bottom of each one in detail.

These instances leave me deeply hurt, insulted, and upset for long periods of time, they make me less relaxed around Ladan, which I do not believe is good for her, it winds up the rest of the family and like wise they start talking in an agitated fashion around Ladan, which is again not good for her. Friends and family tell me to get Ladan out of the place she is in, or to take serious action against them, which are not things I want to do. It makes me feel like there is no point trying to communicate with people who treat us with suspicion, blame and as dishonest. It is hard to discuss these matters with people else-where without them becoming concerned that Ladan is not in safe hands. The reality is that she is, and always has been, in generally safe hands, the staff do care, and have always cared, they just have this endemic process that leads from suspicion to blame and is fundamentally down to people not talking to the family, working as a team and feeling able to ask questions about the sight or sound that makes them suspicious rather than letting it become an allegation for which the family get blamed.

If anybody who has been involved in Ladan's care is reading this and is upset by it then I apologise for that, this is my personal diary on the Internet, it is for friends and family to know how Ladan and I are. This problem has been a continual frustration for us and I feel it is something that should be shared. I have found all of Ladan's carers to be wonderful people, some of them have helped us get through hard times as a family and they have looked after Ladan well. I always find it hard to understand how such difficulties of communication arise as to lead to these hurtful accusations from such nice individuals.

When I first wrote this blog entry I referred to a specific incident which had triggered me into writing the article, the person involved in that incident was identifiable to many people whom I was not aware were reading this page and, although I later went on to say that the same person is very good at getting to the facts of a matter after a false allegation has been made, they were upset by this inclusion in my blog. I can understand that and do not want to imply in any way that they are not doing their job well, they are a very good listener and have always made time to listen to our concerns. If ever things feel wrong here, they are the life-line and it is incorrect and improper if they are seen as a main player in the problems I have detailed above because of the examples I used. These matters arise everywhere and the person I referenced is one of those who can be sought to help sort them out, there should be no doubt of that.

Ladan Update

2007-04-29T21:59:00.000+01:00

Hello, it's been a while. I'm sorry for the silence, I've been without a suitable computer to call my own for the first part of this year and not got myself back into the blogging habit. Still, Ladan's uncle has handed me his old computer and I'm pleased to be back in blogger land.

How is Ladan?

Ladan is in a similar condition to the last time I wrote an update. There are some changes. In terms of awareness Ladan seems to have at least a low level of awareness for more of the time than he has done for most of the last couple of years, the moments of higher awareness where Ladan seems to be trying to communicate and can follow certain basic requests are still less frequent, say a couple of times a month, but those moments have also been encouraging.

Medically Ladan has remained quite stable. She has not been calm all the time, she has had a few things bothering her over the last five months but nothing too serious, so far at least.

Ladan was on a lot of medication for her Churg-Strauss vasculitis which caused this whole scenario, that medication has been relatively rapidly reduced to almost nothing. We will need another blood test to be sure that this has gone ok, hopefully that will take place very soon.

This last week, in particular, something has been bothering Ladan on and off, it may be an upset stomach or even a touch of hay fever, or it may be a symptom of medicine being withdrawn or it may be negatively related to vasculitis. There are no obvious symptoms other than Ladan's episodes of distress several times a day. I'm usually able to calm her down when she is starting to show signs of distress, otherwise her distress tires her out after a short while and she goes to a deeper sleep again for a while.

I have to leave it there for a moment, I'll hopefully update you again soon.

By the way, the talk to Ladan link doesn't seem to work at the moment, in as much as the recordings aren't reaching me, I'm looking into it.

Send yourself to Ladan

2006-11-19T21:47:00.000Z

Send your message here.

Ladan generally responds to voices and frequently looks at people or tv/computer images. There are several indicators that Ladan is not only aware of the people around her but also understands them too, at least some of the time.

I have always felt that Ladan appreciates hearing and seeing her friends and having a variety of people talk to her but, since many of you are far away from Newcastle, there has not been much variety of late. Therefore I think it would be great for Ladan if you could send something of yourself to her which I can share at a time when I think she will be most able to appreciate it.

To this end you can now upload any audio, video or image files you wish to prepare and/or share with her and you can directly record a voice message from within your web browser.

If you don't know what to say to Ladan then there are several ideas at the bottom of this page to help you.

Don't be shy, give it a try! I'll send you feedback on how Ladan responds.

Bright Eyes

2006-10-11T13:54:00.000+01:00

Ladan is still stable and has often been looking very "bright" lately. "Bright" is a term frequently used to describe how healthy and awake a person looks. If you think about the difference you see in somebody's eyes when they are wakeful and alert (bright eyed) as opposed to when they are tired and sleepy, this is the look that is described as bright and it always seems encouraging to see it. Several people have commented that Ladan is looking good and seems to be using her eyes more at the moment, often apparently following things in the room. A few people who had not seen ladan or a while, medical staff and family/friends, have also commented they they perceive an encouraging improvement during their absence.

Ladan's chemotherapy dosage (for her vasculitis) was halved recently and if everything goes well for another couple of weeks then they will try to stop the chemotherapy medication completely. It has taken a while for the process of reducing Ladan's medication to get under way, she may be on a fair amount more medication than she really needs to be but the plan must be to reduce everything gradually and one medication at a time, both to ensure that problems are unlikely to arise and that if a problem did arise it would be known which change might have caused it.

The Undiscovered Brain

2006-09-14T21:22:00.000+01:00

There have been two encouraging items in the press recently about patients diagnosed as being in a persistent vegetative state (PVS), a condition where it is believed the brain has no awareness of the world around it but is able to support basic life functions such as breathing.

In Cambridge a group of scientists used a special scanning technique (called fMRI) to discover that a 23 year old woman could hear and that her brain responded to requests to imagine activities in exactly the same way as the brains of healthy volunteers did. On Tuesday this week The Guardian printed a detailed article updating a story they first told in May this year about the effects a sleeping drug called Zolpidem has been having on patients in the same persistent vegetative state, as well as on other patients with brain related problems. Beyond these recently reported findings there are also interesting results to be found from people using a drug called Levodopa which is commonly used by people suffering from Parkinson’s disease and there are the interesting scans and testimonies of people who have come out of long term states of reduced consciousness which add to the weight of information which has serious implications over what assumptions can be made for the "unconscious" brain.

As the husband of a woman in a state of impaired consciousness I have a first hand perspective of the assumptions that are made about people in this kind of condition and why these discoveries are important.

There are two main areas of interest that these discoveries have an impact upon, they are the understood level of awareness of the unconscious brain and implications for continuing care and treatment.

There are several classifications that are often given to people in a reduced state of consciousness, in addition to the persistent vegetative state there is also the minimally conscious state (MSC) where there is some identifiable awareness of the environment around and the Locked-In state where the individual is thought to have all their cognitive functioning in place but is unable to move or communicate but for, possibly, the blink of an eye. These are basic summaries rather than scientific descriptions.

In reality even people who are diagnosed as being in PVS will often have relatives and/or carers who are sure that they see regular signs of awareness. What the research in Cambridge has shown is that in at least one of these cases there was some awareness which would have remained undetected using standard methods of testing.

To understand the importance of this discovery you have to know what happens to patients who are in any form of unconscious state where awareness is difficult to detect, and to their relatives. Here I can use Ladan as an example, though I have also come into contact with a few more patients and their families over the last couple of years.

When Ladan was unconscious after her first haemorrhage in November 2004 she quickly recovered to a point where she was able to obey simple commands and track with her eyes, though sometimes she would be more asleep than at other times. A Registrar Neurologist spoke to me and other members of Ladan's family while Ladan was in this state and on a bed in front of us. He told us that Ladan was not aware of anything, she could not hear anything, she could not tell that her family was around her and that it was unlikely that she ever would have such awareness again. He told us that it is common for family members to imagine such awareness exists when it does not and that we should accept that we were just seeing what we would like to see. Stood there, in front of Ladan, he asked us to confirm that we understood what he was telling us. A couple of days later that same registrar's face was a beacon of happiness as he himself witnessed Ladan following everything he asked her to do with her eyes and face. He had seen much less evidence than we had seen, but until he had seen it for himself he was convinced that we were imagining it.

Now imagine if, at that earlier moment, Ladan not only heard everything that the registrar had told us but that it was followed by us saying "well, I guess that’s it then", and leaving her to be by herself for the most part of her life from that moment on. Thankfully I knew myself to be of sound enough mind to be sure that what I had been seeing was real and I immediately leaned over and said several reassuring words in Ladan's ear as soon as he left her side to assure her that I knew she was aware, could hear, and would not be left alone.

This is just the first stage at which this assumption, that an outward lack of signs of awareness is evidence that a patient cannot really see, hear or have awareness of their environment, might have a serious impact on their future care and support.

Because people in a reduced state of consciousness are able to live with minimal assistance (such as being fed and cleaned) they are generally kept in a care environment where there is a strong likelihood that they will pick up serious infections or develop other complications, sometimes related to how well they are looked after, which will require identification and treatment. Relatives are often asked if they would like their loved one to be treated in the event of serious infection or left to deteriorate, and this decision is often made on the basis of an assessment that the patient has no awareness of their environment, no ability to tell that loved ones are there, no ability to see or hear, no perception whatsoever. Even if one close relative, most likely the one who spends most time with the patient, is certain that they are seeing real signs of awareness there, it is still likely that other relatives will hear what the doctor is saying and attempt to convince the closest relative that they are imagining everything and should focus on their own life more instead of holding out hope for somebody who, they are told, is all but dead. So although an assumption of zero awareness does not affect whether somebody lives or dies in the earliest stages of their continuing care, this belief can have a major impact on how long the patient will continue to live once they start picking up infections from the hospital or care home environment.

The recent study in Cambridge should ideally sound as a trumpet blast to doctors who boldly state that patients cannot hear and have no awareness, and make neuro-specialists much more careful in the way they describe a patient’s condition. Ladan’s two neuro-specialist consultants have always been very open minded in their words and actions.

There are a number of patients who recover from long or short term loss of consciousness with at least some memories of their time when they were theoretically unaware of anything around them, but these memories are often vague or inaccurate and are therefore probably dismissed too easily. Although the study in Cambridge may not seem to prove very much it does remind everyone that any current diagnosis of PVS is an assumption based on tests which, it is known, cannot give a full picture of what the brain may or may not be doing.

There may be a lot more loving and optimistic care and support for patients if these assumptions were stated as the assumptions that they really are and not presented to families as scientific facts, and with more support, and more to live for, more people who were thought to lack awareness might even find the strength to improve to at least some greater degree.

Beyond the implications on how infections are dealt with and how a patient would be communicated with and supported with a more open-minded assessment being given to relatives, the discoveries that are being made with Zolpidem and from newer scanning techniques with recently improved patients may have important implications for the way that patients with reduced levels of consciousness are looked after and treated.

There are now several reported cases of people who have had severe brain damage showing areas of brain as ‘dead’ on a scan and then, after some unexpected future improvement, had a scan which shows activity in those locations. This has always been considered impossible as the brain is thought to be an organ that cannot regenerate to repair itself. The trials of the drug Zolpidem in South Africa have uncovered scan results of this nature and have raised the suggestion that brain tissue might be able to hibernate rather than die. Such a suggestion raises questions over what potential exists for recovery following brain damage.

Zolpidem and Levodopa are two drugs that have had very unexpected results on patients with reduced levels of consciousness. Zolpidem is a sleeping pill which was discovered to have amazing results when a brain damaged patient who could not communicate was agitated and given the sleeping pill to calm him down, shortly after administration of the drug the patient turned to the nurse and seemed to focus on her, the nurse asked the man if he could hear her and he replied “yes”. It is not yet known for sure why the drugs have positive effects on a large number of people but there is a theory that the traumatized brain develops an increased sensitivity to a neurotransmitter in the brain called GABA, GABA inhibits responsiveness and is thought to be part of the brains mechanism for dealing with pain, the theory is that Zolpidem is stopping this oversensitivity to GABA and so allowing the brain to become more responsive. This theory falls nicely in line with the observations that Levodopa has an impact on people in reduced states of consciousness. Levodopa increases a neurotransmitter called dopamine in the brain, which is important for movement and cognitive function, dopamine neurons are known to be suppressed by GABA. Beyond the obvious hope that success stories relating to these drugs brings to the table it also may raise some questions over the fairly common use in PVS and similar patients of a drug called Gabapentin which is designed to imitate GABA neurons in the brain and is used to reduce a patient's responses to pain or agitation, it may even be prescribed for use instead of handling the patient in a comfortable fashion. If there is truth to the theory that reducing sensitivity to GABA is the key to Zolpidem’s success, and it is seen that continued use of Zolpidem has a cumulative positive effect on patients, then it might be that using drugs like Gabapentin is having a negative long term impact on any chance of recovery.

While this blog entry may be too specialized for many of you who come here for updates on how Ladan is doing, I hope it will be encouraging for the steps that are being made, however small, toward better understanding the states of reduced consciousness that people fall into. The articles below, particularly the Guardian's G2 article, make for interesting reading.

Further Reading:
G2 Article on Zolpidem
Cambrdige MRC- Detecting Awareness in the PVS
BBC News - Vegetative Patient Communicates (with video)

Ladan, One Year On

2006-08-15T11:45:00.000+01:00

Although Ladan fell into a coma on 4th November 2004, it is now a little over one year since we believe Ladan had her last haemoorhage, coming at the end of nine or more traumatic months of medical upsets. Since then Ladan has remained in a stable condition.

Ladan shows only minimal signs of any consciousness, that is to say that she opens her eyes, often responds to auditory, visual, tactile or gustatory (taste) stimulation, and on rarer occasions will apparantly track with an eye (her eyes have remained divergent since her last haemorrhage) or respond to a series or requests with appropiate blinking. Ladan's breathing often changes according to her state and this response is also frequently observed when changing the topic of discussion to something personal to her.

Improvement cannot be measured on any large scale, but physical stability still slowly improves, such as blood pressure and temperature stability, and when Ladan is going through a more responsive period blinking responses have been observed more frequently and probably for longer durations, though such events are still relatively rare. Earlier reports in my blog have seen Ladan more responsive than this but that was prior to the last haemorrhage, in the same way as Ladan was communicating by nodding and shaking her head prior to the seizure in December 2004, each event brought a serious set-back in the path of recovery, which is why a year of stability is, in itself, something to be thankful for.

Since May we have been in a care home called The Minories in Jesmond, Newcastle. It is a very friendly home and much quieter than the Hawthorns in Peterlee or the hospital was. Professional input into Ladan's case is minimal and almost exclusively clinical, but that is pretty much the how it was at The Hawthorns and the hospital anyway. Ladan has not, as yet, had any serious problems at The Minories and seems very settled here, I nearly always come in to find Ladan looking settled in the mornings. Myself and Ladan's other family members are also made to feel very welcome here day and night, which I am sure has a possitive influence on Ladan too, probably in more ways than one. There are a few problems which are taking a long time to get sorted out, but so far Ladan seems to be doing very well there.

There is a new rehabilitation centre opening in Newcastle at the end of the year which we still have the option of going to if things don't seem adequate at the Minories, but I am hoping that will not be the case. In the longer term, if there is no major recovery in the near future, I still plan to get Ladan out of the care home environment and into a real home environment where I can be there for her in a more normal fashion, the medical professionals want Ladan to remain in a care home environment for a significant period of time to be sure that she is stable enough to move into a real home.

Quick trip to the Lakes

2006-08-07T15:44:00.000+01:00

Last Thursday I drove over to Lake Windermere for the afternoon to meet up with Ali and Simon (not pictured above), it was my first trip to the Lake District and the scenery on the drive there was stunning. You can read more about the trip here.

How Ay! Aiyv moved oop ear like.

2006-07-21T21:11:00.000+01:00

It is now much more certain that unless and until I - or preferably Ladan and I - decide otherwise, rather than the Primary Care Trust or a doctor, we can stay in Newcastle Upon Tyne for the immediate future. Therefore I have found a place to live in Heaton, just over a mile from Ladan's room at the minories. It's a one bedroom ground-floor flat in a purpose built complex of 12 one-up one-down self-contained flats.

It's lonelier without the lively and supportive Ferdowsian family around anymore, but it's a very short journey to and from Ladan's room which is the important thing, and having a local address is very useful too. Speaking of the Ferdowsian's, Kamran has started blogging now, he also links to some very artistic photography and video work by Neil.

I've made one flying visit to Kent to pick up our belongings but it wasn't long enough and the van wasn't big enough, so there will be another very quick trp in the near future. I had hoed to meet up with some friends last time but didn't have the opportunity, hopefully next time it will be possible.

Ladan is still very stable, and at a slow rate that stability, and her awareness, still seem to improve gradulally. I will write more about Ladan soon as it is nearly a year since her last haemorrhage.

I'll get around to emailing my new address out soon, but email me if you need it sooner.

The Ten Female Martyrs of Shiraz

2006-06-19T00:16:00.000+01:00

On 18th June 1983 ten women (pictured above), one of whom was only 17 years old, were executed in Iran for teaching Baha'i children more about their Faith. They were among more than 200 individuals who were killed in Iran for being Baha'is but their story has stood out throught the years as they were all women and many of them are very young.

Shirin Dalvand, pictured bottom left, was 25 years old when she was executed, Shirin was Ladan's aunt and, while Baha'is beleive it an honour to die for your beliefs, Ladan has always been very upset about the loss of her aunt. Ladan was only seven at the time of Shirin Dalvand's execution, it is hard enough as an adult to attempt to comprehend that a government should seek to kill people on basis of their religion.

Sadly there are renewed fears over the safety of the Baha'is currently living in Iran, following an instruction from Ayatollah Khamenei that all Baha'is living in Iran should all be identified and their activities monitored.

In Newcastle we decided, at the last minute, to hold a devotional meeting to commemorate the lives of those martyred in Iran, including Shirin, and to pray for the safety of those Baha'is living there now. In spite of the very short notice there was good attendance, and the basic programme of a few prayers and a little music and video was very moving.

There are several resources on the Internet relating to the executions on 18th June 1983, executions which followed on from several other Baha'is being executed in Shiraz for being Baha'is, some of whom were related to these ten woman. Among the resources available is a music video by Canadian pop musician Doug Cameron called "Mona and the Children", there is also a web page about the event here, and you can find the latest on thPersection of the Baha'i commun ity in Iran from here

Martin Roper

2006-05-12T01:38:00.000+01:00

My Uncle Martin, husband to my mother's sister Mavis, died unexpectedly from a heart attack on the morning of April 15th. He was 68 years old.

Martin had been feeling a tightness in his chest for a few days but did not feel it was anything that needed a doctors attention, on the morning of Saturday the 15th May his wife noticed he was struggling to breath and tried to assist but he soon died in her arms.

I would not say I was particularly close to Uncle Martin but I was always fond of him, as an uncle he was a cheerful man and never short of interesting things to say. He was also considered to be quite healthy, Martin and Mavis had retired to Uppingham, Leicestershire, for the surrounding countryside and views and enjoyed their walks together. I managed to make a very rare excursion from Newcastle for the occasion and was pleased to have been able to make it. My Mum also flew over from Zambia and I got to catch up with my cousin Phillip Roper whom I had not seen for many years.

The Funeral service was held on Thursday 5th May at Kettering Crematorium. It was a beautiful hot sunny day. Many of the guests had met Martin and Mavis on holiday in Greece where they often went. In the service Martin was referred to as a private man that very few people knew very well, but that everyone who did know him liked what they knew.

The picture is of Martin in Newcastle on the day of our wedding.

The Minories

2006-05-11T23:59:00.000+01:00

On Tuesday 2nd May Ladan and I got into another fully equiped emergency ambulance to travel between the Newcastle General Hospital and The Minories on the other side of the city centre. The Minories is a much more homely environment but still benefits from fully trained nursing staff and from a medical cover persective possibly slightly better connections. The rehabilitation service at the Minories is more basic but should be adequate for Ladan's current needs, as yet the new physiotherapists and occupational therapists have not met Ladan, The Minories uses staff from the local community disability services for their rehabilitation work and advise, but the care team take on some of the day to day activities that are recommended by these professionals.

It is too early to have much to say about the Minories as yet, below are a selection of photographs of Ladan's new room which you can click on to enlarge.